Bioethics Discussion Blog: Patient Activism as a Means of Promoting Change in the Medical System





Sunday, June 08, 2008

Patient Activism as a Means of Promoting Change in the Medical System

I have learned a lot during the past upcoming 4 years of running this blog. I have learned that my 50 years as a physician has not provided me with all the understanding of what patients think and what they are concerned about regarding us physicians and the medical care system in general. I have learned that though I have virtually always had a professionally comfortable relationship with my patients and their families and they with me, since none told me otherwise, there may have been times when the relationship may not have been as comfortable as I thought, perhaps because I was not directly and frankly informed. The same may be said of the patient’s relationship with other components of their medical care and the medical system in general. Reading some of the threads on this blog such as I Hate Doctors and the threads on patient modesty, infant male circumcision and history taking amongst others show the intensity and extent of discomfort patients hold with doctors and the medical system.

I have been pleased that my blog has enabled many patients to ventilate here their traumatic experiences and serious concerns about doctors and the care but also the attention they received or didn’t receive. But as I look at what has been written here, I think that many of the concerns do have merit for the medical system to be aware and consider for change. However, I don’t think that simply writing and ventilating to this blog is the way to effectively to encourage change.

Particularly with the patient modesty threads, I have suggested to my visitors to promptly and frankly talk to their doctors about their concerns but also think about becoming formally activistic in their attempt for change. This means that likeminded visitors should get together and form groups which can then extend its membership to folks outside of this blog. Then, there can be actions devised and taken to make their views clear not only to their physicians but also to medical institutions, associations, medical boards and political representatives.

What I would like to read on this thread regarding patient activism to change the medical system is my visitor’s own views of the practicality and the possible effectiveness of such an approach. I also would like to read what actions could be taken that would be reasonable and acceptable to the members of the activistic group.

The reason I have devised this thread is because I suspect that, unless I am wrong, my suggestions regarding activism in particular with regard to the extensive discussion here of patient modesty issues have not been moving along. So I think it is important first to discuss what everyone thinks about taking an active stand and publicizing that stand rather than simply moan, groan and complain to each other. I have said that the first active stand is to bring the personal concerns directly to the doctor’s attention. Why should that be difficult for many patients? Is there a sense of power inequality between doctor and patient which precludes open communication from the patient to the doctor? Is such an inequality really more imagined than real? And so on.

Please let keep this thread simply on the topic of patient activism to change medical practice and the medical system. Don’t go into the details of the various patient concerns and experiences. The presentation of the concerns and experiences should be written to the individual pertinent threads. Again, the issue here is what can all patients with complaints but with suggestions for change do to mitigate their concerns and promote the change they envision? ..Maurice.

Graphic: Created by me with ArtRage.


At Monday, June 09, 2008 11:23:00 AM, Anonymous Anonymous said...

My husband and I totally agree that patients should discuss their personal feelings/issue with their physician as a starting point of dealing with patient modesty and personal preference of healthcare personnel doing personal procedures. We did just that and was met with antagonistic behavior, ridicule, dismissal of the patient/doctor relationship. Personally, I do not think the medical world is eager or willing (in general and for the most part) to have patients express themselves and demand certain things. They feel they are in charge and it will be done their way. They simply say they cannot accomodate you. I do think many physicians still operate (no pun intended!) on the parent/child relationship. Outpatient surgery centers in which so many surgeries are done are unaccomodating to specific requests blaming personnel limitations. So the beat goes on.

At Monday, June 09, 2008 5:07:00 PM, Blogger Maurice Bernstein, M.D. said...

That's why, if you think medical practice shouldn't be carried out that way, you should make an effort to change the system. With regard to the individual physician, make sure that before you leave the office, the doctor at least receives your brief straightforward evaluation of the visit. Don't be argumentative but be informative. Don't expect a sit-down discussion. I know as a doctor it would have been important for me to hear feedback from the patient. Just as the dosage of a drug may need to be monitored based on the response by the patient's symptoms, so the way a doctor interacts with the patient as one person to another should be guided by knowing the response to previous actions. A patient who tells nothing to the doctor can't expect any change. ..Maurice.

At Monday, June 09, 2008 5:39:00 PM, Anonymous watchdogonscience said...

Dr. Bernstein,

You essentially are asking us to “arrange the deck chairs on the Titantic” by requesting us to provide “suggestions for change” or speak to our providers regarding this change. From both the provider and patient perspective, we have a broken medical system which cannot be fixed with change. It will have to be built anew.

What do I envision with this new system?

A healthcare system that is affordable to all and one that embraces human dignity and goodwill toward men.

A system that provides a doctor an environment that is conducive for him/her to once again really CARE about patients and ADVOCATE for patients and ENJOY medicine while not being overtly burdened by the threat of lawsuits or the thumb of the insurance adjustor or the problems of running a business.

A system that provides better medical schools to train doctors to “think outside the box” to provide the level of quality care needed for all these new unknown illnesses that are now emerging and leaving patients hopeless.

A system that provides family physicians with “open” and mandated academic collaborations to assist in their diagnosis if needed.

A system where patients have access to a free physician-rating website which will assist them to find the type and quality of doctor that might best help them.

A system where healthcare records are actually private and owned by the patient. (HIPAA is a joke.)

A system where blood and body parts are actually owned by the patient. (We can put a man on the moon, but moving a blood sample from a medical center to another medical center involves an act of God.)

A system that actually rewards doctors who practice good quality medicine but also removes incompetent practicing physicians to alternative healthcare positions.

A system where physicians are free of conflicts of interests toward special interest groups so that once again public health and safety will be adequately prioritized and disease to some degree can be prevented.

A system where the amount of public moneys, which are being poured into the development of biotechnologies and medicines, be mandated to be placed back into the public system, instead of falling only into the pockets of profit-making medical industries via patents and high priced drugs.

Talking to our physicians about these problems will not solve any of them. The average doctor can’t “break through” the system either, even if he did care. The problems are serious. They are inherent to our out dated, ill-managed, broken medical system. We need a new one that encompasses both physician and patients interests and rights. We need to work together to accomplish this, but not in the doctor’s office with vain attempts to band-aid individual problems while the majority of patient’s tribulations remain ignored or multiply. We need true leadership in the medical community from good, kind-hearted and simple family doctors who live and breathe with these problems everyday. I know they are out there. They just have to get the time and integrity to step up to the plate.

At Monday, June 09, 2008 6:16:00 PM, Blogger Joel Sherman said...

I'd just like to remind everyone that Jimmy has an ongoing effort to organize patients for medical modesty. He has mentioned it on Bernstein before and it can be referenced here on my blog.

As I understand it, he has been disappointed in the amount of interest shown. So if you're interested go to the link or contact Jimmy at Nothing can be accomplished unless more of you take an active role.

At Monday, June 09, 2008 7:25:00 PM, Blogger Maurice Bernstein, M.D. said...

Please remember this thread is not to discuss the experiences and views of patient modesty or any other "hot button" issue. They should be discussed on the appropriate subject thread. This thread is only for discussing the general value and methods of patient activism to promote change.

I have moved the comment of hsm from today to Patient Modesty Volume 3 where it should have been posted. ..Maurice.

At Monday, June 09, 2008 7:28:00 PM, Anonymous Anonymous said...

I am definitely a member of the "bitch and moan" club. Or maybe I should say the "bitch and moan and change doctors or hospitals club".

I do agree that the first thing to do is to try to have a dialogue with your physician, which may work if they are ignorant of your needs. If they aren't responsive, however, no use beating you head against a wall.

Are you aware of patient activisim that has really changed practices? Changes that I see came about because of litigation, or money (hospitals putting in nice, private birthing suites instead of the old wards) or competition for satistied patients. If you have any positive examples of patient activism I'd love to hear about them.


At Monday, June 09, 2008 8:03:00 PM, Blogger Maurice Bernstein, M.D. said...

To watchdogonscience, believe it or not, I fully agree with you. I have been telling my visitors to the patient modesty threads that though they should be communicating their concerns with their doctors, it would require a more activistic approach to make change though patient organization and as I have already mentioned here pressure applied to institutions, medical organizations and associations, state medical boards and the legislature. Can the whole system be changed at once or in a short time? Unlikely, unless a big meterorite struck our country or somewhere in this world. But gradual, progressive change is certainly possible but it would require that the institutions and those other components of the medical system be made aware of the magnitude of the patient concerns and the consequences of not changing.

I am sure most doctors are unhappy with the way medical practice is practiced (certainly in the United States and perhaps elsewhere) and believe it or not, would accept change not really to make bigger bucks but to feel more like we all wanted to feel when we started this medical career--that we were helping others and feeling wonderful inside to do that. We still may be helping some others but I am sure many doctors don't feel so wonderful inside. ..Maurice.

At Monday, June 09, 2008 8:47:00 PM, Anonymous Anonymous said...

It has been my experience that just as soon as the issue of patient modesty (especially male patient modesty) is raised, the conditioned response is to shut
the door on the discussion. Medical personnel are of a mindset that they have far too much to concern themselves with, directly related to health matters
(as they view them), to want to
compromise in this direction.

Malpractice insurance and the threat of lawsuits, together with the overwhelming number of females in medical support roles, shifted considerations being offered to women, not female modesty, per se.

Males do not represent the same active threat of sexual malpractice and their totals are so low among supporting staffs that it is extremely easy to dismiss any requests on a "take it or leave it" basis. Any who press for special consideration are written up as "difficult" and often referred away or refused treatment.

I don't believe that activism is going to be allowed to take root here. Change can only come about at the level of the courts and it can only be in the comparison of male vs. female in meeting fulfillment of the BFOQ "right to privacy" in relation to employment quotas and the distribution of same. (Right to privacy has already been married to Right to Modesty in the BFOQ provision so let's not start any needless debates on that point! They are one and the same.)

Until we can place the issue before a judge and have him/her state that men are catagorically denied options and nothing is being done to relieve the problem then nothing will shift. Doctors and insurance providers must be shown to be in violation of a court order to remedy a situation before anything is going to happen.

Suppose, for example, that a recent poster to "Patient Modesty 3" had the resources to sue his health provider for giving him no-option in gender for the sonographer needed for his testicular ultrasound tests. (Certainly any female faced with OB/Gyn or L&D procedures would have had this option.) Suppose this suit could be raised to class action and linked to BFOQ fulfillment. Now, a judge has to rule that discrimination by sex is just and fair and that the law need not be applied equally to men and women. I doubt a court could make such a ruling. It would be legally unsound. So the judge would have to give the insurance provider 60 days to come-up with a course of action that would allow some possibility for a male patient to have a male tech. Now, it's no longer a matter of what the doctor or office staff wants to accomodate or what the insurance provider will pay/allow for. It's been mandated by a court order.

This is the ONLY WAY the issue is going to be advanced. It's fundamentally unfair to discriminate against one sex without any attempt at change.
The BFOQ provision exists for exactly this purpose but there have been no challenges by male patients that I know of. It would appear to be a violation of civil liberties to discriminate in care provisions by sex.

We have been discussing this issue for several years on this blog but NOTHING is ever going to change until we have this legal action.

We need test cases and rulings.
That means we need attorneys and
angry patients. Proving the
fairness of the request appears
sound. I don't think it will fail
in court... if we could only get it in front of a judge.


At Monday, June 09, 2008 8:58:00 PM, Blogger MER said...

I started a thread on about this issue. There have been other threads about this and related to it on that site and I've read them. But those other threads contain only stories and expereinces. In this new thread, I'm supplying some research and evidence. I also make mention of this and other blogs. Go to and search for the topic Male Medical Modesty. It's not good enough to just complain. We must give evidence, which isn't easy, because there's not much research available.

At Monday, June 09, 2008 9:19:00 PM, Blogger amr said...

Dr. B,

One way to start a potential national dialog on this issue is for you to publish a study based upon "findings" from the blogs over the last 2 years. There easily 300+ single spaced pages of content. This can be digested and summarized into a paper that is published in a medical journal. Just as the study published about non-consensual pelvic exams started a national conversation, so too could this be a starting point. I know that you have wanted to stay "neutral". I believe that you could publish something without committing to a view point.


-- amr

At Monday, June 09, 2008 9:34:00 PM, Anonymous Anonymous said...

MER (Medical Researcher's) thread
on is excellent.
Recommended reading for all those
who visit here.

P.S. Let's stay focused, guys.
This belongs in court. We've
talked about it far too long at
the doctor's office.

At Tuesday, June 10, 2008 10:59:00 AM, Anonymous Anonymous said...

I think there's a huge disconnect between what's important to patients and what's important to providers.

If you were to survey patients, things like respect and caring would fall near the top of the list. If you were to ask physicians, nurses et al. the same question, they are far more likely to focus on things like technical competence, teamwork, training, efficiency and so on.

Until we bridge this disconnect, I don't see much progress being made. In fact I sense an increasing "fortress" mentality among many providers, who frankly are under an incredible amount of stress these days.

I think it goes back to understanding what it's like to be a patient... to be in unfamiliar territory, scared, often not feeling well or in pain, lacking information, and trying to navigate in a system that is complex and frustrating and that renders the patient powerless. And I think this perspective is something that needs to be taught early in medical school, early in nursing training, and then reinforced over and over.

Maybe more patient stories need to be shared so the professionals understand exactly what the patient's experience entails. Medical care can be painful and invasive and dehumanizing, and providers should not lose sight of the fact that what's routine to them is not routine to the patient.

I take heart in some of the changes I've seen. Even a decade ago, it was unthinkable that any institution would apologize to a patient after a medical injury, let alone actually disclose what happened. But it took a long time for this to be recognized, and the change had to come from the industry itself, not as a result of patient activism.

You know, I think sometimes the whole system is just so overwhelmed that when patients complain, even when their concerns are valid, it's lumped into the category of "another whiny patient." And we get dismissed because it's easier to ignore us than to have to fix the complicated things that go into the daily practice of health care.


At Tuesday, June 10, 2008 7:09:00 PM, Anonymous Anonymous said...

I agree patient modesty should be drilled into students of all healthcare proffesions, of all levels.
I do believe it is drilled in pretty hard but students graduate and move on and I think they very much follow suit upon a new job and working closely with the veterans healthcare workers who say " don't worry hun I have seen it a thousand times".

What I think is maybe there should be refresher courses on patient sensetivity. This classes should be manditory across the country and have to be taken every two years (continuing education basically). Maybe even have some voulenteers actually speak on what patient modesty means to them.
I think it would be a GREAT way to rattle a cage.

Just a thought.

At Tuesday, June 10, 2008 9:34:00 PM, Anonymous Anonymous said...

OK so we speak out....I would like some help in figuring out a way to broach the subject to my Doc. I get the feeling he is a bit uncomfortable too...I want to get his support , but not intimidate him which would not get anything more than superficial treatment of the issue.
( I hope this fits this thread DoktorMo..if not please excuse me) Thanks

At Tuesday, June 10, 2008 11:03:00 PM, Blogger Maurice Bernstein, M.D. said...

leemacaz, yes it fits the thread. I'll keep my response generic.
Why not try something to the effect "I would like to keep you as my doctor but I find that I have a concern about a problem that involves both you and me. I would like, with your help, to work out this problem together. I will explain to you what concerns me and hopefully you can tell me how my concern affects you and what you suggest will remedy my concern." This introduction, I think is important to preface your request and allow the doctor to understand that your concern poses a common need for resolution, both you and the doctor need to work it out. This should engage the doctor to then listen to a complaint with a more tolerant attitude then if you jumped immediately into the issue with an agressive outpouring.
This approach should lead the doctor to consider that the resolution of your concern requires the doctor's active participation in addition to yours.
You will not be intimidating since "working together" with the patient is a known and accepted professional process to attempt to accomplish the medical goal.
If the doctor doesn't behave professionally in this regard, you have picked the wrong doctor.

By the way, for my visitors who don't understand what doctor-patient "working together" in the practice of medicine entails, I will give some examples. Starting, it includes the patient providing as much of a complete and accurate history as possible and the resposibility of the doctor to ask the pertinent direct questions. It includes then the patient cooperating with the physical examination and the physician performing the exam in a way to provide the greatest information with the least amount of discomfort both physical and psychological.

"Working together" further involves the doctor explaining tests or procedures or treatments and the patient freely asking for more information or clarification so that the patient can make an informed consent decision. "Working together" further means that the patient attempts to follow the doctor's prescription orders and notifies the doctor about any difficulties doing so or any new symptoms that arise and the doctor then making modifications in a timely fashion.

"Working together" means both the improvements and failures in diagnosis or treatment and relief of symptoms and the underlying illness are recognized by both parties and discussed together.

"Working together" finally means that a patient should never be abandoned and when a patient decides to leave the care of a physician, the patient should inform the physician what has led to that decision. ..Maurice.

At Wednesday, June 11, 2008 10:40:00 AM, Anonymous Anonymous said...

Dr. Berstein it is too bad that all physicians don't have your qualities of patient/doctor interaction. So many that I have seen act arrogant and indifferent, brushing through an office visit or supposed exam in less than 5 min. When we had a dialogue with a doctor regarding an upsetting experience we were met with, "oh, I would have thought you'd understand." That was it and then in our state it is very litigious and we received a certified letter stating a bunch of b.s. that he no longer could meet our healthcare needs. Bottom line, doctors are trained to spot "trouble maker patients" and they don't want the potential of a lawsuit. Medicine in 2008!

At Wednesday, June 11, 2008 11:29:00 AM, Blogger Maurice Bernstein, M.D. said...

I know that in my medical school, students are not trained to spot "trouble maker patients" but they do have experience in their first year to learn about "the difficult patient" which can be a patient that is angry or seductive or has their own belief system about disease but the whole exercise is not about ignoring or abandoning them but how to continue the relationship but be therapeutic in their best interests. ..Maurice.

At Wednesday, June 11, 2008 2:11:00 PM, Anonymous Anonymous said...

My previous post of 6-11, 10:40 am I would like to add that the phrase used as "trouble maker patients" should be replaced with a patient that is not silent, submissive, compliant, non-agressive in the slightest use of the word--a person to speak their mind and expect to be a partner in the healthcare process. I think most people that doctors see on average on a day to day basis are the opposite of all those descripts and that is what they (doctors) like and have come to expect from a patient. For a person to speak up --the physician is shocked and taken aback. I am not saying we were rude in any way; simply politely stated our concerns. They don't know exactly how to respond other than to be offended in some way and thrown out of their normal bounds of being the "captain of the ship." (As we were so rudely spoken to). Well, guess what? we jumped ship. The certified letter we received was a waste of his time/money/stationary, as we wouldn't have gone back anyway. Who needs that attitude when you are paying for a service?

At Wednesday, June 11, 2008 3:59:00 PM, Anonymous Anonymous said...

Thankyou, Doctor Mo. Because I have avoided docotrs for so long (only going about 5 times in 40 yeaars and then only for a very specific ailment...infected finger and such) I had no idea how to make the relationship two sided. i had jsut assumed because of some way in the past occurences that you only told the doctor what he asked and did what he said....I just want an honest and mutually respectful relationship and your elaboration of what that relationship consists of and how to get and maintain it are greatly appreciated. By intimidating him, I meant that I do not want him to feel I am threatening him...and your advice clearly should help me let him know what I want with no arm twisting which would serve neither of us.

At Wednesday, June 11, 2008 7:04:00 PM, Blogger Maurice Bernstein, M.D. said...

I am glad what I wrote has helped and may be educational for other visitors. Remember, that speaking to your doctor about any of your concerns is the beginning way to develop an activistic approach to solving those concerns. To hold back and not to talk to the doctor about it, solves nothing. It is certainly not activistic, in fact it is a somnolescent ("sleep on it") approach. Your doctor may remain unaware and your frustration with the issue continues unaltered. ..Maurice.

At Thursday, June 12, 2008 8:15:00 PM, Anonymous Anonymous said...

Make an appointment prior to your exam to go over any concerns you may have. Do this while fully dressed so you are more comfortable.

If you request something and the doctor says your request can't be met be sure to get a clear explanation as to why.

If you discontinue using a doctor's service for any reason I agree that you should send a letter whether it is due to a rude receptionist or the doctor's attitude. If enough people complain they just might change their ways.

While there are some doctors who will send a letter like the one mentioned above there are others who won't. The ones who don't are the ones you want to utilize as your physician. While I understand a doctor's fear of a lawsuit not everyone wanting to discuss things is looking to sue. Many just want and need to be heard.

I would also encourage more males to go into the healthcare field. If you feel strongly about it think of a career change. Also, encourage those around you that you think would excel as nurses or techs to look into this field.

Call the local colleges and urge them to get out there to the high schools to educate them on this field.


At Thursday, June 12, 2008 10:30:00 PM, Blogger Maurice Bernstein, M.D. said...

If any of my visitors want to write an off-topic question or statement, please don't try to post it here or on another thread but I would be pleased to receive it by e-mail. My e-mail address is: ..Maurice.

At Friday, June 20, 2008 9:06:00 PM, Anonymous Anonymous said...

There is a large pool of possible male healthcare workers in the returning GI'S from Iraq and Afghanistan...A campaign to recruit them to help the country the same as their military service might appeal to many of them. The job situation and government education grants and subsidies would make the idea a lot more appealing....

At Sunday, June 22, 2008 7:16:00 PM, Anonymous Anonymous said...

Nice to see this thread started Dr.Bernstein.

Sorry I haven’t posted in awhile, I’ve been enjoying fatherhood for the third (and hopefully last) time and I honestly didn’t find where modesty volume 3 started until a few days ago. I guess this is in response to leemacaz and hopefully this fits this thread in regards to how to approach your doctor on your concerns (I also posted this on JSMD’s website). This is just from my experience but when the subject of surgery first came up with the orthopedic surgeon that was caring for my first shoulder problem, I did my research on the procedures available for my type of issue (impingement), I printed them out and took them with me when we had our consultation. The doctor only talked about what he was going to go in and fix, he never mentioned the prep or anything else. So when he asked when I’d like to schedule, I hit him with my questions. I told him that I know of a doctor that can do this procedure without using GA, without the large incision on my shoulder and wouldn’t intibate (SP?). I told him that based on the people that I’ve spoke to that went to this doctor and had the procedure done in this manner (as compared to what he was going to do) the recovery time was faster and they felt a lot better sooner. I asked if he could do the procedure in this manner and of course he couldn’t. So I moved on and didn’t have to worry about the modesty issues discussed here. Of course I also had it done at a surgery center so that helped to, the rules are much different in these placed as compared to hospitals. I’d recommend anyone here to do the research themselves ahead of time so that you won’t be surprised either when you had it done or after the fact. It can also help you understand what your physician is telling you, I don’t know about the rest of you but I’ve got lost before in just the terminology the doctor’s use. Speak to my level and use words that I can understand is what I’ve had to tell a few. Again, this is what I’ve found to be useful for me.


At Sunday, June 29, 2008 5:14:00 PM, Anonymous Anonymous said...

thanks jimmy.
It appears if you can and will keep on looking you can get closer to getting treatment that also takes into account one's personal feelings about modesty.

At Friday, July 11, 2008 9:38:00 AM, Anonymous Anonymous said...

If anyone is wanting to cite examples of why legislation is needed for the protection of patient (especially males ) rights in reference to modesty, go to and start reading the threads..especially ones concerning foley catheterisation or tatoos..
The commentary is astounding.
The fact that they think a nurse of other person should be fired for reporting improprieties..or that respectfull treatment robs them of humor or fun (their words.not mine)totally wipes out their credibilty and defense...
While I am sure not all doctors think or act this way, it is apparent that they are unable to police the situation adequately without a law to demand that they do.
I do not think that legislators will be so recalcitrant in taking on this issue if they read the posting on this site.. nor will they think someone is making a mountain out of a molehill...
As busy as many doctors are it would be in their interest to also read these postings..and see where their credibility is going.


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